Researching With the Public

[This text has been written by Laura Giménez, Project Manager, and ISGlobal, Barcelona CaixaResearch Living Lab team]

More and more research teams—including in the health field—are incorporating the participation of citizens and other stakeholders into their work. This new model of knowledge creation and management is based on the integration of civil society, industry, public institutions and academia in research and/or co-creation processes. The term co-creation is gaining currency in the field of innovation. It refers to product- and service-design processes in which users play a central role from start to finish.

The term co-creation is gaining currency in the field of innovation. It refers to product- and service-design processes in which users play a central role from start to finish

Various methodologies of knowledge co-creation have emerged. Some of these approaches, such as participatory action research (PAR)—which incorporates transformative action with participation involvement into the process—have a long tradition, while others, such as science shops, are more recent. At the same time, we have seen the development of co-creation processes for innovation that fall somewhere between the production of scientific knowledge and the design of technological and social solutions (living labs, fab labs, maker spaces, etc.). These approaches have been gaining social recognition and strong support from funders.

The health field, for example, has seen the emergence of patient-centred care models that have led to the incorporation of patient knowledge into research processes and care design. In short, the emerging patient experience paradigm seeks to incorporate the user’s perspective into the design of health services .

Why Should Knowledge Production Incorporate This Perspective?

Participatory research is based on two main epistemological principles. The first is that all knowledge is legitimate. Academic or expert knowledge is one form of knowledge, but conducting participatory research entails recognising that citizens have knowledge that is equally valuable and needs to be incorporated into the research process. Research subjects thus go from being the object of research to being active subjects, actors with knowledge and the capacity to make decisions about themselves.

Participatory research is based on two main epistemological principles: all knowledge is legitimate; and a democratic view of knowledge, which holds that knowledge should not remain solely in the hands of “expert” academic elites

The second epistemological principle is a democratic view of knowledge, which holds that knowledge should not remain solely in the hands of “expert” academic elites. Hence the emergence of open science, a growing movement to make scientific research—and the communication thereof—accessible to all of society.

These elements are especially relevant in health research, a field where patients should be recognised as active subjects in the development of their own health.

Workshop organized by IrsiCaixa team (InSPIRES).

What Do We Really Mean by Participatory Research?

Stakeholder participation can be incorporated into different phases of the research cycle. Demand originating from civil society can be the driving force—the very origin—of a research project. Science shops, for example, were envisioned as a means of addressing research questions that citizens spontaneously pose to academia as a result of their curiosities or concerns.

Stakeholder participation can be incorporated into different phases of the research cycle. Demand originating from civil society can be the driving force—the very origin—of a research project

Another participatory approach involves the construction of research questions. Whatever the origin of the demand or social concern, the question that will guide the research can be co-designed with different stakeholders.

The public can also participate in the methodological design of research projects, determining the best approach to answering the research question, establishing procedures and assigning roles, or in data collection, gathering information for later analysis. Public participation in large-scale data collection is generally referred to as citizen science. A well-known example of a citizen science project is the Mosquito Alert app, which involves the public in the fight against disease-carrying mosquitoes.

Another participatory approach involves the construction of research questions. Whatever the origin of the demand or social concern, the question that will guide the research can be co-designed with different stakeholders

Civil society can also take part in the analysis of the collected information and help to create knowledge from this information. This sort of participation can vary in intensity. For example, there are numerous qualitative studies that share the results of their analysis with the groups that have participated in the field work (interviewees, focus group members, workshop attendees, etc.). In these cases, the experts carry out the analysis and then discuss their findings with the community. However, the community can also be included in the process of categorising information and formulating explanatory hypotheses.

Community involvement can also take place during the evaluation process. In a PAR study, for example, where the aim is to create a transformative impact through the research process itself, stakeholders can help to design the indicators that will be assessed to measure the study’s impact. In some cases, stakeholders may participate in the evaluation of research carried out exclusively by academic experts, while in others they may take part in the evaluation after having participated in the entire research process.

Workshop in Punata (Bolivia) on Chagas disease within the framework of a Science Shop promoted by InSPIRES project, led by ISGlobal.

Finally, the community can also be involved in the transfer process, which is essential in order for the created knowledge to be applied and for the research to have a transformative impact on society. Transfer does not happen automatically, simply by publishing information; a process of translation and appropriation by society is required in order for the knowledge to be applicable.

It is important not to confuse information with participation. Information is the first stage in creating participatory channels with the public. Information alone can be a very valuable element of the empowerment and transformation of civil society. However, in order for research to be truly participatory, there must be a process of agency on the part of the public in one of the aforementioned phases of the research cycle.

Living Lab: Co-creation for Innovation in a Real-World Environment

As we have seen, participatory research can take many different forms, one of which is the living lab—a process of co-creation for innovation in a real-world environment. This co-creation process can take a diverse range of forms. In many cases, living labs are linked to technological innovation processes and use co-creative design tools to obtain user input. However, some living labs are more social in character, focusing on innovation for the development of services and programmes or the improvement of public policies. One example is the Covadonga Urban Lab in Sabadell. This urban laboratory is open to the public, a space for urban and social stakeholders who want to imagine, create, test and implement solutions to important social, urban and environmental challenges facing the city of Sabadell and the neighbourhood of Covadonga in particular.

Participatory research can take many different forms, one of which is the living lab—a process of co-creation for innovation in a real-world environment

In short, there is no single methodology that defines living labs; what defines them is co-creation for innovation in a real-world environment.

In the field of health research, we have two examples of living labs nearby. The first, at Hospital Clínic, is known as the Patient Experience Forum. The purpose of this collaborative space is to foster exchanges between all those involved in health care—patients, relatives, carers, health professionals, providers and researchers—in order to identify unmet needs and co-create solutions for improvement that are applicable to the real world.

The other example is the Barcelona CaixaResearch Living Lab, which is promoted by the ”la Caixa” Foundation and the Barcelona City Council, in collaboration with ISGlobal and IrsiCaixa. The aim of this project is to co-create research agendas for innovation on various health-related challenges through the involvement of various stakeholders from the system.

Presentation of the Barcelona CaixaResearch Living Lab at the Science Festival 2021.

Five research agendas are currently under development:

• Healthy eating
• Health and migration: Chagas disease
• Sexual and reproductive health
• Mental health and migration
• Healthy school environments

Another goal of the Barcelona CaixaResearch Living Lab is to promote participatory research and co-creation methodologies in the field of health, providing training and advice for research teams and promoting alliances in this area.

A commitment to public involvement in health research is essential in order to generate sustainable progress in which the responsibility for the necessary social transformation towards healthier societies is shared by all.